Caring for Caregivers

Dr Sylvia Ann McCarthy Hospis Malaysia

 Why do we need to support carers? What do carers need?

What might help to improve support?

What outcomes should we see?

Caring For Caregivers

Most people want to spend as much of their limited time as possible at home Most people want to die at home Informal caregivers are central to making this possible Caregiver mortality/morbidity

next of kin's perception of the patient's suffering, of the patient's fading away next of kin's own feelings of insufficiency physical and psychological symptoms, muscle tension, headache, loss of appetite, anxiety and depression. with existential and social aspects, such as feelings of guilt, anger and loneliness.

Powerlessness, Helplessness

Support Care Cancer. 2004 Feb;12(2):120-8.

2 Systematic reviews of Carers needs

Knowledge and Information needs of informal caregivers in palliative care
Docherty et al Palliative Medicine 2008;22:153-171

A systematic review of informal carers needs in providing home-based end of life care to people with cancer
Bee et al J.Clinical Nursing 2008;18:1379-1393

Knowledge and Information needs of

informal caregivers in palliative care

Communication around prognosis Awareness of pain management Philosophy of partnership between caregivers and health care professionals Needs of caregivers and patients are different Non cancer patients and carers are less likely to receive info, be aware that they are dying, receive district nursing care Family Caregiver concerns were a predictor of inadequate pain management

A systematic review of informal carers needs in providing

home-based end of life care to people with cancer

Emotional and practical support Adequate information exchange o Timing of information o Has to be requested o Written information Open communication 24 hour availability of community or palliative care nurse Availabity of nurses to assist with practical care Health care workers have unrealistic expectations regarding the extent to which family members feel comfortable undertaking nursing tasks.

Carer anxiety
Anxiety related the adverse effects of incorrect caregiving Apprehension about giving medication in case of improper symptom control Carers suffer with ineffective pain management blinded angry sad despairing helpless useless inpatient frustrated

Factors that influence care givers ability to cope

The caregivers approach to life Patients illness experience The patients recognition of the care givers contribution to his or her care. The quality of the relationship between the care giver and the dying person The caregivers sense of security
Cancer nursing vol 31 no 1, 2008

Carers Tasks
Cooking Cleaning Laundry Emotional support Care of other family members Income generation Transport to hospitals Shopping
Manage medication Feeding Dressings Manage a syringe driver Suction Ng feeding Turning and positioning a patient Using an oxygen concentrator Using a hospital bed and ripple mattress Catheter care

The Needs of Terminally Ill Cancer Patients versus Those of

Caregivers for Information Regarding Prognosis and Endof-Life Issues
Qualitative Study Interviews with patients, care givers and health care professionals Patients needed more information about prognosis Caregivers needed more information about the process of dying Also dealt with the issue of family members requesting to with hold information from patients

Clayton et all CANCER May 1, 2005 / Volume 103 / Number 9

Understanding the concept of a good death among bereaved family caregivers of patients with cancer in Singapore Patient- Having a quick death with little suffering family caregiver- to say a final goodbye. Patients prefer not to die in their children's presence the children wished to be present for the final moment. family caregivers
o to give the patients permission to die o to feel recognized for the efforts made o and to have had a fulfilling caregiving experience.
Palliative Support Care. 2012 Mar 1:1-10

Time of greatest need

Immediately after discharge Caregiving over 11 months associated with less difficulty in performing direct care tasks Increased need in the final stages

Improved support for carers

Improved symptom control

Improved quality of life

Decreased morbidity and mortality of carers ?

How can we improve our support to carers

Psychological interventions Palliative and Hospice interventions Information and Training Respite Care Physical intervention (yoga)
Harding et al Palliative Medicine 26(1) 722

Question Prompt lists

Carers asked twice as many questions about caregiver issues

Journal of Clinical Oncology Vol 25 No 8 2007

 Clinical nursing intervention Teaching family care givers and patient to manage symptoms 10 contacts in 20 weeks No improvement in rates of depression amongst care givers Recommends a longer intervention Journal of Pain and Symptom Management Vol 30 No 2 2 August 2005

Hospis Malaysias story

Qualitative research with patients and carers told us that carers were suffering. But
o Staff are already overworked o Resources are limited

So..
o Carers guide o Distress thermometer o Nurses trained to give practical support

Distress levels of carers

17.9% 17.9% 14.3% 10.7% 10.7% 7.1% 7.1% 7.1% 3.6% 3.6%

10

Distress

Problems faced by carers

65.5% 62.1%

44.8%

41.4%

41.4% 34.5% 34.5%

17.9% 6.9%

Practical Support
Recruiting nurses to provide practical nursing care Involving volunteers in home care oSocial support

Challenges
Adding to an already heavy workload
Evaluation Behaviour change

Advocacy
Understanding our own populations needs
Engaging with the public about their views of care at the end of life Creating awareness with relevant authorities